Tuesday, March 31, 2009

March 31st is CHD awareness day. I ordered some bracelets and ribbons and proudly passed them out at the hospital today. =) I bought Marcus and I t-shirts that say mommy and daddy with the turquoise ribbons.

A lot went down today. The ENT doc came in and changed Camden's trach out for the first time. So, this was the first time Marcus and I got to see it. It was shocking for the first few seconds to see that hole in my baby's throat, but I was fine! He gave us an earful in 1o minutes, then bronched Camden again and said the broncomalasia looks better. My husband finally asked him to give us a percentage of just how much better. ( I thought that was a great ?) The ENT said it was 50 % better!! That took me by surprise and I was just so thankful to God! Then they took him completing from 5 to OFF on the pressure support, so he is now strictly on CPAP pressure. Tomorrow they will give him windows off everything to see how he does. Completely off the vent. Yes, it is moving too fast for me!! One doctor wants him sent home on vent, others do not. We just aren't sure what Camden will do as of yet, but either way he is coming home soon..... on or off the vent! I finally asked one physician when they are thinking of kicking us out. She said it will be a maximum of one month, but they are hoping to cut it shorter than that. (Um, I need to get things ready!) It is now all about Marcus and I being totally comfortable in the trach/emergency care. We have learned a lot already, taking turns hanging out at the hospital doing Camden's care. If he goes home without the vent we will have to stay two nights at the hospital and do all the care before going home. If he goes home ON the vent, we'll have to stay longer. So we will know more in a few weeks.

He is also getting his tongue clipped ( he was tongue tied too ) and will be starting speech therapy. They are all very concerned about him learning to suck and want to eat and want to get that ball rolling.

Oh, and I gave him a bath today for the first time. He pitched a fit, but Im okay with it now because I can pick him right up and comfort him. Then he smiles. Little stinker!He loves his bouncy seat and wasn't over stimulated with the music and vibration. He is tolerating things so well. Still not sucking paci, but we still work on it. We also give him dum dum lollipops to taste. LOL ( yes, good thing they do not contain hydrogenated oils, and even the nurses pick on me about it - now you quit laughing, Gentges ;p) They actually put in an order for that. ;) They were out, so I went to walmart and got some, but all they had was huge bags and I am now stuck with 300 dum dums.

Sunday, March 29, 2009

I'm tired and it is late and I couldn't think of anything else to say. But I did find one this morning before church. =) hmmmm.....

Camden has had a wonderful weekend. He is getting used to his trach care, and mommy is learning and doing some of it as well. :) I have stayed late with his awesome primary nurse, Kim for the past three nights and learned a lot. I am feeling okay about it. They trach site still has some healing to do, so I just worry that I am hurting him. He seems fine though! Doesn't even cry every time he is suctioned, unless he does the "leave me alone" cry. The ENT hasn't been back to change the trach yet. He is the only one that can do it the first time, then we can do it once he gives the okay and makes sure all looks well. Hopefully he'll be back tomorrow to do it.

The amazing news is that they are trying to now wean him off the vent! They are hoping before he goes home. ( I told them I still want to take the vent home and they need to slow down on all this weaning! =p ) He is just using pressure support from it and was on a support of 10 right after surgery. They starting to wean a few days ago, and he is now down to 8. He continues to amaze me. He lays there and smiles at me. Then as soon as another nurse comes to visit him he about breaks his neck to see them! So nosey! It was so hard to give him back to the nurse tonight, but I know I'll have him home one day and can hang out with him all I want!

And....a blood culture came back positive. Always something, huh? ;p Just some infection (kind of like a UTI ) that he has to be on antibiotics for 5 days. He has a nasty IV in his head! As pitiful as it looks, the nurses said he didn't cry when they stuck him there and that he did cry when they tried to stick him in other places before trying the head. Weird looking place for an IV...He is slowly going down on meds too....Thank God! He now only gets his blood pressure med if needed. Progress....

I asked Micah what she wants me to tell Camden today. She whispered, " Jesus loves you" in my ear. Isn't that so true? My mom had to remind me weeks back ( and how silly of me to have to be reminded ) that even when I have to leave him, Jesus is right there with him.

Saturday, March 28, 2009

Thursday, March 26, 2009

This has been something I have been waiting on for 9 weeks. We can now hold our baby, and whenever we want to. ;) Today I held him for an hour and 45 minutes and he was all smiles. We worked on sucking the pacifier and he did surprisingly well! At one point he was even loving it and sucked himself right to sleep. ;p We'll just keep working until he gets the hang of it. He has been a different baby this week since his surgery. I think he feels so free and he is so comfortable. All the nurses say they can't believe how content he is after all he has been through. That is the sweet peace of Jesus that Camden has! =)

Camden has picked up Orsa and has to be in isolation.( which he already was in, so it isn't a big change, lol ) It is just some sort of bacteria that we can all carry on our clothes and such, they just test the babies in there weekly for it and he finally caught it. ;s They say it isn't anything to be concerned over, so I am not going to be. I just don't feel like it =p So, they have to move him, and since they are doing so, Camden will be getting a ..... BIG BOY CRIB! I told Marcus to go up there tonight while I stay with the kids, since I have been a major Camden hog. They are letting him hold Camden while they change his room. ( ok, Im a bit jealous ;p )He just emailed a picture and he is snuggling with his boy...I cant wait until he is all healed up and we can hold him whenever!! =)

He seems to be tolerating his feeds better. Back on full feeds, slowly going in over an hour. He now weighs 9lb 15oz. Been off all pain meds for 48 hrs and seems to be comfortable. :)He has a great nurse, R, three days in a row this week, so that makes me be able to relax a bit more when I am not there. She was one of his ECMO nurses, and she loves him!

I had a great visit with him this afternoon and got some cute videos on my phone for Micah. She looks forward to these everyday. She asks me if she can "get closer" to him and I zoom in the picture for her. She carries my phone around and talks to him. :) Since she hasn't been able to see him yet, I told her she will be the very first to get to hold him when he comes home!

Monday, March 23, 2009

and Camden seemed a bit weary tonight. They said he had a good day, but by the time I got there he was cranky. ;( He was back up to 82 mls, and it didn't seem to agree with him. He was gagging and pushing it back up his g-tube. Maybe his tummy wasn't ready for all that so soon after surgery. He would try to reach his fingers to his mouth, but then when I would help him out, he wouldn't know what to do with them. He would push out that little bottom lip and cry ( which I heard a tiny bit of leaking around the trach ) and then I just wanted to cry....I'm definitely feeling weepy tonight. I just pray he sleeps peacefully.....

Sunday, March 22, 2009

okay.... I can't believe I am saying that, but he seems so much happier! No more gagging and constant coughing. He doesn't know what to do with his lips touching, and he has been making some hilarious faces! He went without morphine from 3 this morning until this evening around 8 tonight. He seemed comfortable and pain free, but he was just having a fit this evening and the nurse thought some morphine would be good since it was so soon after surgery. Other than that he had a great day.

I tried to work with the pacifier, but he gagged so I stopped. It upsets me to see him not know how to suck and do the normal things with his mouth. I knew oral aversion was an issue, but to actually see it, well it just saddens me!! I know it is small compared to what he has been through....and we will continue to work with him. So with that being said, the g tube is looking good and he is up to 19 mls and hasn't thrown up. That is a praise! They are increasing mls pretty fast so hopefully he'll be back to his normal 82 mls so we can pull that nasty IV out again!

I was just staring at him for hours this evening. He was wide awake ( even after that dose of morphine! ) and I just kept thinking about how proud I am to be his mom. God has used Camden to show me the real meaning of children being a blessing from God, and I just want his life used for God's glory....

Pretty swollen, but looking great! He had a really good day considering it was one day after surgery. He seemed to be very comfortable last night. I just don't want him in pain! The surgeon used a turtle for his bandage this time. :)

Saturday, March 21, 2009

was yesterday and a success! Nissan and g tube went well. Surgeon said she checked out his diaphragm while in there and it looked great! She didn't have to repair anything on it. His trach is in place and he looks wonderful. I can't believe how different he looks without the tube. His face is totally free of everything! A bit swollen, but that is about it. I will have pictures tomorrow...I can't get them off hubby's phone. Thank you Lord!! And thank you for all the prayers.....

Thursday, March 19, 2009

okay, he'll still have some sort of tube, but his face will be free!! ;) Everything still looking good for the surgery tomorrow at 1:00. I am so glad it will all be done at once. I had an awesome visit with him today. He looked so cute in his blue outfit. The nurses are starting to want to dress him now. He also had music therapy this evening. I am so glad he fell asleep this time. Last time he threw up and cried while she was there....I felt so bad for the lady! ;p They will stop his feedings at 2am and put an IV in to get him ready for surgery. My poor baby, but I am praying for Jesus to give him comfort! I hate to think he has to endure more pain. Supposedly the trach site is a bit sore for a few days, but heals really nice. I just can't wait until this part is over.....

Wednesday, March 18, 2009

Finally found out surgery will be Friday and everything will be done all at once, praise God! Camden had a field trip today...to get an upper GI. They want to know what is going on before doing the Nissan. He slept while they took him off his bed for the transfer, which was surprising since he isn't used to being held, but come to find out he was up all night. ;)

Peanut also came to visit.....

Mom and I went back to see him this evening and he had a bath ( I am still too nervous to do it ) which he pitched a FIT through...... great lung exercise. :p The nurse ripped off his monitors and I had to act like I wasn't having a mini breakdown, but he stayed nice and pink. He finally wore himself out after about 5 minutes and then decided to giggle for the next 5. What a stinker!

Tuesday, March 17, 2009

Either tomorrow, just the trach, or on Friday, the nissan, g -tube, and trach all at once. The OR is available tomorrow, but they weren't sure about Friday. If he gets trached tomorrow, he will have the rest of the surgeries sometime this month when the surgeon is available again. I still will not know a definite until early tomorrow morning....that is how it goes!

Camden did well today. Not much reflux and stayed in a good mood most of the time. His diaper rash is coming back, so that stinks! He had a kidney ultrasound which he giggled through ( after me not being able to get him to smile for a long while!) I think he is a bit too comfortable with ultrasounds. ;p But such a sweet boy! I am home now and miss him so much!

A bit nervous about surgery, but excited that we are making progress. Please pray for surgery to go well, and for Marcus and I to have peace. Thank you!!!! :)

I also want to post some pictures. Since I started this blog so late, I don't have any pictures of those first days. I thank God everyday for Camden and I am so amazed at how well he is doing and how wonderful he looks! Just less than 5 weeks ago he was on ECMO, had surgeries, and had everything else done under the sun, and I am just so excited over his progress. Please realize that these may be difficult for you to look at before scrolling down:

Monday, March 16, 2009

Surgery date will be decided tomorrow....I hope. That is the latest. Both surgeons are not able to get together until the week after next, but the ENT is available to do the trach twice this week, so it is either trach this week, do the g tube and Nissan surgery later, or do it all at once later in the next few weeks. I will find out soon...As for Camden, he threw a fit on his momma 10 minutes after I got there. I keep saying I can't handle another fit, but I seem do be doing it. ;) Ofcourse he is recovering much better, and his stats only dropped down to 60, but the memories keep coming back and I keep thinking as I am breaking out in hives, ( those that know me well, know my perma -hives ) "Oh, pleeease not this again!" He is staying awake a lot during the day, and is getting bored from just laying there! (Guess I'd be pitching a fit too) He loves to be talked to, loves to hear us sing, ( even my mom's songs ;p) and I am slowly introducing him to toys. Today he met the famous fish aquarium crib toy. He was okay with it and even smiled. He has to be in a certain mood, or he gets over stimulated. All in time.....

Saturday, March 14, 2009

They are much needed! No changes other than his already high blood pressure getting higher. They didn't want to go up on his dosage of meds, so they are going to watch it to see if they need to.He was a happy little babe today. His diaper rash looks good, and he is tolerating me changing him, as long as someone is talking to him. ;) His nana and I talked with him for hours. He talked back to us with those sweet eyes....

Friday, March 13, 2009

How nice to see Camden feeling better after his rough day yesterday. He had a few fits, but he was coughing lots of secretions up his tube. :( As soon as he was suctioned he would be happy again. He had his primary nurse on today, so that always makes me feel better. The nurses are great, but it is so comforting when you have ones that know Camden. This weekend he just needs to rest up for surgery, which we will know more about next week. We pray it is a nice, quiet weekend. :)

Ofcourse this should be dated March 12, but I had a late night at the hospital.

Today was one of those eventful, pit in my stomach days....They extubated and he did so well on cpap!! I was so proud. :) They gave him 14 minutes on it, he kept his stats up, but he struggled really hard. They said it was heartbreaking. ( I chose to pass this time, as last time was very difficult for me to watch him gasping for air ) He did better than we thought, and they even heard a faint sound from him. ( Now I would've loved to hear that ) He was totally exhausted. Slept all day and when he would start to wake up he would throw fits. I watched his stats drop a few times too many today and seeing him struggle to breathe is just pitiful!!So, the decision is to trach. We can now begin to get on with his little life.....get him up and slowly moving around instead of laying flat. Surgery date hasn't been set, but I'm hoping they will wait until next week sometime. He will also get a g-tube ( feeding tube that goes straight to stomach) and another surgery to help with his reflux. They will go ahead and get it all done at one time. I hate to see him have to be put under ...... but this is all part of this rollercoaster ride they told me I would be on.So a lot accomplished today!

still getting 82 mls of breastmilk (slowly through feeding tube )and has good days and bad days with the reflux. Actually did well with it today of all days!

Wednesday, March 11, 2009

Tomorrow morning they are definitely extubating and trying Camden on cpap. If that fails they will be doing the trach, gtube surgery next week when his surgeon gets back in town. I hate to see my baby go through another surgery, but I have to keep reminding myself it is nothing compared to what he has been through, and he has to have surgeries to get better. I was just glad to get an answer this morning. I love his physicians and surgeon which is such a blessing! Another exciting day....little nervous and anxious to see what Camden does. Prayers for opened airways! :) Respiration a bit high tonight so they will be checking into that, but other than that an UNeventful day, which I like. :0)

*** It was so nice to see my church family tonight! Camden can't wait to join Eastpointe. ;p

Tuesday, March 10, 2009

Basically more waiting, which I am a pro at doing now. ;) Few Physicians are not in agreement with the trach deal ( whether to go straight to trach, or give another chance extubating ) sooo hopefully tomorrow we will know a definate answer. FOR NOW there is an opening in the OR on Friday for surgery if he is trached. ( they will also do the gtube then )** Little update for those wondering why the trach. Camden has severe broncheal malaysia, so when he is extubated his airways tighten and he can't breathe. But his is right lung is doing well with the help of cpap pressure. He can't go on cpap alone because when they take the tube out, which is kind of acting as a straw, he destats. They figured this out last time when they tried extubating him and no sound came out while he was crying, therefore realizing it was problems with the airways. So, as scary as a trach sounds, there are many positives with it. I could work with him on breast feeding, he may have less oral aversion the sooner he is extubated ,I could pick him up to comfort him, he would start growing stronger which could help him grow out of the airway problem. Also that tube down his throat can cause the malaysia too. So, even while knowing all this, and seeing we are heading towards a trach, as his momma is still praying for the Lord to open those airways! :) He is just so close so it is so difficult to watch him have to go through all this.Still not keeping all his food down. Reflux is normal for cdh kids, but they are still wondering if the tube is not helping with the gagging issues too...hard to say.Camden had one bad fit today where he started to drop his stats, and needed a bit of vent assistant for about 30 seconds....not too bad for him. ( maybe worse for me! ) He recovered well. So there he was all wore out from trying to breathe and being mad as a hornet, he takes a cat nap then wakes up, smiles and coos ( silently, of course ) for about 5 minutes straight.....that was the precious part.....

This picture is from today....still a happy baby through it all!!

Peanut went in to see him last week and told him, " You are going to be so happy when you see real life...this is not what life is like...it is sooo much better!"

We are overwhelmed with the love and prayers. We are so thankful for the letters, cards, meals, support. Everything has been such a huge help and blessing. Know we are so, so, soooo thankful and that we love you all!!

so that was the plan today....most were in agreement to trach. I had expected this, but was hoping for a miracle. Well, the surgeon decided to give him another try and extubate tomorrow. Another "big" day for Camden. They will also consider g tube. He had a bad day yesterday with the reflux, but I am sure the tube down his throat doesn't help the situation. For now he still has the feeding tube. Did pretty well today with one minor fit but he recovered nicely. Good thing--Im a bit over the code blues. Oh, we are still wearing the yellow gowns for the water bug. Those that had babes in the NICU will know what I mean! Hopefully just for a few more days.

ever accomplish that?! First off, I truly admire all the CDH mothers'( and any special needs moms) blogs I have read. Faithfully blogging from the beginning of their journey....heroes in my book! I think it is great. Anyway, as a mother of a CDH baby, I know that when you read other blogs you want details. I am going to try to wrap it up into a few posts then catch up to the current day, whenever that may be. :) Also to my church family and friends....I thought this is a wonderful way for you all to know what is going on and to get updates whenever you feel the need to pop in and check on the little man that you have been praying for ..... which I am so grateful for.....

So here it is in a nutshell...6 weeks packed in a QUICK post :

I never had a sonogram, so this was all a shock. Born on 1/22/09, home birth, straight to Wolfsons hospital, diagnosed with CDH which I had never heard of. Immediately on vent and ECMO as soon as possible. I want to say a couple hours after birth. Surgery day 1/30/09 finding out he didn't have a diaphragm, intestines, part of stomach, spleen, ( which bled too much while trying to be pulled out so they had to take it out ) and tip of liver were all in chest cavity pushing his heart into the right lung and of course covering the left lung, which was there but very small. The surgeon also found an extra spleen which was awesome since he had one taken out! Awful hypertension. Good kidney and heart function, praise God! Thought we snuck by the bleeding out with being on ECMO during surgery, but a few days later it was bad. Lasted few days but with chest tubes and way too many transfusions, that part was finally over. FIRST time off ECMO on 2/6/09, back on within 36 hrs then officially off on 2/13/09. Total of almost 3 weeks. Up and down on vent rates, nitric oxide for few days, weeks of weaning off ( weaned by 3/7/09 ) with methadone and ativan, many many fits then stats dropping, tests after tests, poke after poke, high blood pressure, failed attempt trying CPAP on 2/26 and then reintubated, held you for the first time a five weeks old, hypertension resolved ( God healed ) on 3/3/09, held 2 more times but it is more of a stress with the vent, good MRI results on brain, and so much more that I'm leaving out. During all this my heart feeling like it was ripped out and being in a total state of shock, but remaining to stand in awe of our Father as he guides me through.....wow.

( Im reading this a year later and I sounded a bit crazy. I wasnt trying to make light of it, just trying to share the medical issues he had/has and obviously still in a bit of shock. whoa, but there it is =0)

About Me

Camden James joined our family on January 22, 2009, weighing approx 8-9 pounds and measuring around 22 inches with an UNKNOWN congenital diaphragmatic hernia. He joins his father, Marcus and I and three brothers and a sister.He has a trach and has been off ventilator since winter of 09. He gets all nutrition from a gtube.Life is not what it was, but we are adjusting to our new normal and trusting God as He continues to guide.... *Camden had his first "reherniation" diaphragm repair on Oct 30 2009, patched with gortex.* Some colon had made its way in chest cavity, behind his heart.*He was hospitalized due to his first sickness resulting from a cold(we think) for the first time on Jan 6 2010, at almost one year old.*REASONS FOR BLOGGING? Obviously to keep close friends and family updated but more importantly to help others with special needs children. Other blogs encourage me, give tips, and help me realize that I am not alone on this journey.I hope to do the same for them.*Camden was decannulated on June 2, 2010!!!*UPDATE for 2011 He finally took interest in eating, but it isnt possible due to his nissen surgery being too tight. New hurdle to overcome..